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Wednesday, October 24, 2012

I need to vent. I need to write without editing myself. I'm not looking for sympathy or a pity party, I just need an outlet. Here goes.

Rory hates dance class. Refuses to go. Hates every second of it. Yet...if you spend any time with her, all she does is dance and sing. She tells me daily that she wants to throw her tap shoes away, she won't be in the dance recital and she doesn't every want to go to the studio again. Talk about breaking my heart. I try to remind myself that she's only 3 and next year could be a totally different story but man...it devastates me that she won't be in this year's recital. Shot through the heart.

One of my longtime dancers switched to the other studio this week. I found out via instagram. Honestly, I never really knew she quit my studio and then bam she's at another studio and posting all over the place how much happier she is and how much better life is, how she should have done it 3 years ago. Ouch. I didn't even know this girl was unhappy, let alone so miserable she needed to switch studios. High school girls are a mystery. But still. Ouch.
My aunt was deployed 6 weeks ago. I hate this part of our lives. We've never been a deployment family before. My uncle and their 2 sons are in Texas. They are too far away. I want to take the boys to do fun things, help them get through this long year. I can't even imagine what it's like for people who have a child or spouse deployed. God bless our military.

On that same note...Democrats. Please stop saying that Obama ended the war. Clearly it's not over. If it was, my aunt wouldn't have been sent to the middle east. Just saying.

Thursday, October 11, 2012

We left our house at 4:45 this morning, got to the hospital at 8:15. Now for those of you who aren't familiar with Children's Hospital of Pittsburgh, it's AMAZING. Colorful, bright, happy, wonderful. We had the best care in the Radiology department.

Rory had to drink 3 half cups of contrast fluid, one every half an hour the first couple hours we were there. The first time they gave it to her with a little lemonade mixed in. She didn't like it at all. The nurse switched it to an apple juice mix, promised Rory a prize every time she finished and bam. She did it. It took some coaxing at times but she did it. Drank it all and didn't spit any out. Compared to the barium...yep today was a success! She was rewarded with a little Doctor's kit, a princess crown and some sort of little ball popper game. Clearly Dollar Tree fodder for the treasure box but to Rory? It was gold! She was in heaven and that's all that mattered.

She had to have an IV inserted today. I explained to the nurse how really stinking awful our last needle experience was. The PA came in and we decided to give Rory a little nitrious oxide (laughing gas) to calm down. It helped a little...she still was crying in pain but she at least wasn't flailing like a dying duck this time and we could hold her still. The nurse got it in and ready on the first try. Thankfully, she had a nightie on that was way too big and the sleeves covered it up.

We had a delightful time in the waiting room getting ready. We watched tv, played games, drank her special juice...delightful. Rory was awesome.

Then it was time for the actual CT scan.

We went with our radiologist to Pirate Island. Rory's CT room was entirely done as a pirate island. Monkeys, a fake dock, parrots, waves, everything! It was amazing. The actual CT machine was painted like a pirate ship. She hopped right up on the table and started watching Toy Story. She did pretty good until they had to push some fluid through her IV. It doesn't hurt but it scared her. So that set off the fear. She held very still and listened to instructions but man she was scared. She kept having tears roll right out of her eyes. But she did it!! The radiologist said she got good clear pictures and we'll have results on Monday!

The worst part of the whole day was trying to get her IV out. It was taped down really strong, so she couldn't pull it out if she got upset. Good idea...except when we wanted it out. She went BANANAS. She was sobbing, shaking, screaming. So scared and yeah it probably hurt quite a bit. At one point, the radiologist told Rory she was breaking her heart and Rory said "you're breaking MY heart." It was priceless. :) She survived though!

After that....we got to leave! Rory was enjoying a Mommy-Daddy date day so we extended it. We went to the Cheesecake Factory and then to Build-A-Bear. We're exhausted. We're worn out. But you know what? My three year old is a champ and I love her. From the bottom of my heart!

Tuesday, October 9, 2012

On Saturday, my cousin Connor went to his first Homecoming dance! Of course we had to be the obnoxious family that all showed up for pictures. ;) (Actually it wasn't embarrassing to him, since his date has been my student for 8 years and they were going as friends, not love birds. ;)) He looks so grown up and handsome! His date, Katie, looked gorgeous. So much prettier than when I was a freshman! hahaha

Anyways. While we were standing around outside, my photographer Aunt snapped some great pictures of Rory and Trace playing in the leaves. Just one more reason why I love living in the forest...an awesome fall!

Monday, October 8, 2012

It's Monday. It's cold and rainy in the forest. We're taking a field trip to Wal-Mart. Ink cartridge, paper towels, blank cds, a new book for each kid and a treat for mom. Good enough.

No news on Rosie yet. Our appointment was...unsatisfactory. The doctor was very nice and very good with kids. I'm sure she's wonderful at her job but unfortunately she had little interest in the hairball issue and was more concerned with Rory's constipation. She read the xray report from our local hospital off the paper to us and then said if it was her kid, she'd take that report as no hairball and be done with it.

Umm...did she read the same report I heard? It said no less than five times that the patient, a THREE YEAR OLD, was not cooperative and didn't drink an adequate amount of barium.

That's kinda why we drove 3 hours...so that she could have tests administered by people who work with kids all the time. People with the skills to help a 3 year old through scary tests. The radiologists at the hospital here were very good at their jobs but they don't do peds patients regularly...or like ever. This was the first barium xrays the one tech had ever done on a kid.

So frustrating. I called our pediatrician from the parking lot in tears. I was so tired and worn out, I couldn't help it. Well our pediatrician (Jan) got on the phone with Children's Hospital and raised royal heck. Needless to say, we now have an abdominal CT scan scheduled for Thursday and that will definitively tell us yes or no to a hairball.

What a mess.

Rory hasn't pulled her hair or doll hair in over a week now! Dave had the magic idea, promising her an American Girl doll. Some people can't believe we'd spend $100 on a single doll. I'd pay $1000 if it means my daughter stops pulling her hair. This last week has been the longest, most stressful week of my life. I'll avoid this at all costs.

That being said.

Trichotillomania is no joke. It's a real disorder. It's nothing to be embarrassed about. Rory has little control over doing it at times. It happens as a compulsion. It is the same as kids who wet the bed later in childhood, suck their thumbs obsessively or have chronic nightmares. It's not something she chooses to do. It's something we had to learn to call her attention to when it was happening and learn her "high risk" times for pulling. For Rory, that was (is) when she is tired, nervous or bored. She is very intelligent and if she isn't being intellectually stimulated, she pulls her hair in frustration and boredom.

Trich is complicated. It's something that Rory could be past entirely now or it could flare up in a few months, years or even when she is an adult. We will work with her on monitoring her triggers, learning to handle stress/anxiety/being tired in a better way than pulling her hair. Thankfully, she is only 3 and we have a long time to work with all of this before she is an adult. Trich is often associated with anxiety disorders, OCD and a host of other emotional issues. (And yeah, Rory gets a double dose of it because I am diagnosed with anxiety and depression.) But you know what? My girl is so fearfully and wonderfully made that I'm not worried about it. We'll take each trich filled day as it comes and we'll work with it, deal with it and put it behind us. Just like Trace's acid reflux, we'll handle it.

Wednesday, October 3, 2012

Well, Rory is sick. She woke up with a fever Monday, threw up, kept coughing, runny nose...just generally a mess. I decided I needed to go to the doctor with her. She is very rarely sick beyond a cold and I figured it was better to check it out and know.

A little history...Rory pulls out her hair. It's not a secret, she does it in public. We're dealing with it. She started doing it around her third birthday, that's the original reason behind her short hair cut. When Rory had long hair, she'd put a piece in her mouth, twirl it around her tongue and then swallow it. Cutting her hair solved the issue for a while then she started pulling it out. It's a pretty common "tick" in kids. Some kids bite their nails, pick at their cuticles or suck their thumb. Rory pulls out her hair.

She does it mostly when she is bored, scared or nervous. Her teacher and I had a long talk about it yesterday. Rory doesn't seem to pull her hair out at school, at least her teacher hasn't noticed. (This isn't saying she doesn't do it while at school. Rory is very smart and does it in secret sometimes.) While at school, Rory is very stimulated. There's new toys, lots of friends, singing, projects, learning...it's nonstop stimulation. She loves to learn and being in that atmosphere excites her. She has no need to pull.

At home, it's just the same old toys and her brother. Though they play great games, imagine full on scenarios and stories, we read books and color, go outside...it's still all the same. Intellectually, it's not stimulating, new or exciting. It's comfortable and fun, but it's not advancing her knowledge.

The same goes for dance class. When she is in the "baby class" (Pre-dance) she pulls non-stop. She LOVES dance and has my mom, the beloved Gaga, for her teacher. That should add up to a not stressful experience but it is for Rory. She is bored and doing things she's been doing for 2 years, since she could walk honestly.

Well here's the deal.

Rory potentially has a hairball in her stomach. We had preliminary xrays and blood work on Monday. Blood work and urine test were clean (thank goodness) except a bacterial infection. Her xray showed stomach distention. At that point, we couldn't tell if it was in fact hair or just some gas or food. This morning she had more xrays and had to drink Barium. (Let me tell you how much fun THAT was. About as much fun as pulling your own teeth out without Novocaine.) Anyways. Our beloved PA Jan called me this afternoon and I got the news I was fearing.

The barium xrays were inconclusive. Jan and the Radiologist are not comfortable saying she's clear of hair and at this point, there's a really good chance that the hairball is there and infected. (That is what I am praying is causing the infection anyways and not something way scarier...) Tomorrow (Thursday) we head to Pittsburgh Children's Hospital for more tests with a pediatric Gastroenterology specialist. This is extremely comforting to me. We had several visits there with Trace when he was having his choking episodes in summer, 2011 and were thrilled. Excellent care, great facility. I know that we are going to get answers in a few days, even if that answer is surgery.

Because yeah, if there's a hairball it has to come out. And that means surgery. Hopefully it's small enough to just have a laproscopic surgery and not a full "cut her open" surgery. At this point though...I just want to know what is going on.

Please, pray. Pray for Rosie not to be scared tomorrow. Pray for me, I selfishly ask, that I can stay positive and upbeat for my precious Rory Beth-Ann. She is my baby girl. Mommy's girl. Oh now I'm crying.